10.19.2009

As much as I'm thrilled that Lillian is able to get the help she needs, it makes me so sad to know that she's being evaluated by a complete stranger tomorrow who will ultimately decide what kind of therapy she needs without even knowing a diagnosis.

I want her to start therapy. I want to help her. It just makes this all a reality that I haven't had to face for the almost three weeks that we've been home from the hospital. Those three weeks we haven't had to hear negative comments about her condition and we haven't had to talk about the troubles she'll face in the time ahead. We haven't had to do anything but love her and treat her like any other newborn baby. I really don't want that to change.

Even though we haven't been faced with doctors or therapists for the last three weeks, there's still a little voice inside me that questions her every movement. Are her movements normal? Is she holding her hands the right way? Should she be able to move her head more? Does she sleep too much? Am I expecting too much from her? Am I doing enough to stimulate her? Why doesn't she cry like other babies?

Part of me is still holding out that all of the doctors are wrong. They saw a baby that is calm and content and decided something was wrong with her and have been trying to diagnose her every move ever since, and along the way convinced us that something is wrong with our baby. I know that it's a crazy thought, but it's easier to be in denial about everything then have to deal with it.

I guess I should go back to taking things one day at a time. At least we know she will start getting the help she needs after this evaluation.

10.18.2009

10.15.2009

Age - 4 weeksWeight - 7lbs 11ozHeight - 21.5 inchesSleeping habit - She sleeps a lot still, but tends to wake up around 4am, 7am, 2pm-4pm, and again around 7-9pmEating habits - She's still eating through her feeding tube. She's at 65ml every 3 hours this week. Right now she's getting half breast milk and half formula.Favorite activity - She loves to have tummy time on mommy and daddy, sleep, and be held and talked to.Cutest Moment of the Week - Her uncle Cullen was holding her for the first time and she screamed the loudest scream in her sleep. It made us all laugh because she's usually so quiet!Milestones - turning head from side to side, making eye contact, following voices with her eyesFirsts - She wore her first cloth diapers this week and also bounced in her bouncer for the first time! Her first outing was to visit some friends at a camp site, and her first public outing was to Oliver Winery for some fall pictures!

10.06.2009

Lillian Rose was born on September 17, 2009 (6lbs 2.8oz, 20.5 inches) fourteen hours after I was admitted to the hospital due to a drop in her heart rate at our 41 week NST.

A brief breakdown of the labor:

Sept 16 - NST at doctors office showed a decrease in the baby's heart rate and I was sent immediately to the hospital for further monitoring.

2 hours later they broke my water and started pitocin. Baby didn't respond well to pitocin, so they stopped the pitocin and let me dilate naturally to 9 cm after lots of walking, moving, swaying, screaming, and seriously painful contractions. I received an epidural around 7cm at approximently 3:30am. I dilated to 9cm and then the doctor determined it was time to re-start pitocin to get the baby out ASAP, or send me for an emergency c-section.

Lillian was positioned in my birth canal sideways with her cord wrapped around her neck. My cervix didn't center well and it was difficult to push her completely out, so she was delivered with forceps (which caused me to hurt like non other when I was recovering...).

Lillian's pediatrician was thankfully present during the entire 45 minutes that I pushed during delivery. She immediately took her to observe and placed her on oxygen. She determined that Lillian looked "Low tone" and after letting me hold her and talk to her, they took her off to the special care nursery. I had no idea what a roller coaster ride we were in for at this point.

A breakdown of Lillian's first 13 days in the hospital:

- Born Thursday September 17, 2009 at 8:32am- IV placed in her belly button and given oxygen- Friday I got to change her diaper for the first time in the special care nursery- She was given a CT scan (which came back clear) and they placed an IV in her head. She was also taken off oxygen and able to take in room air.- Saturday Lillian took her first helicopter ride to Riley Hospital in Indianapolis and placed on a feeding tube. I was absolutely devastated when they took her.- When we arrived at the NICU for the first time, we found her laying in her warmer sucking on a pacifier (for the first time). Her nurse was Kristen and we absolutely loved that nurse!- Sunday was the first day my milk came in. Lillian remained monitored in the NICU and we learned how to care for her during her feedings and check ups.- Monday was her first bath and I was allowed to breast feed her for the first time. She also got her MRI that night, which came back clear.- Tuesday was the first day we put a full outfit on her. It was pink with polka dots and absolutely adorable!- Wednesday was the first time we heard her cry since the delivery. We were bathing her on the scale after weighing her, and she flailed her arms and let out a wail. We were happy to hear her sweet cry! This was also the first time I had ever seen her yawn.- Thursday was the first attempt at bottle feeding. This did not go well. We met the Developmental Pediatrician and she determined we would not be feeding Lillian by mouth until she passes her swallow study in November.- Friday Lillian was given hand splints for her wrists. We were trained on her Apnea monitor, trained in CPR, learned how to place her feeding tube, and I was able to breastfeed with a nipple shield (to monitor how much she was able to get).- Saturday Lillian passed her car seat and hearing tests. Phil placed her tube for the first time - it was also the first time we had ever seen her cry with real tears... heartbreaking.- Sunday I had to place Lillian's feeding tube again, never fun. Luckily we had our favorite nurse back for the weekend, Kristen.- Monday Lillian found her fingers. She likes to suck on her hand when she's hungry now.- Tuesday Lillian had a Sleep Study, which did not go well, but luckily they are letting us take her home anyway since she will be on the monitor.- Wednesday we FINALLY took her home.

I know that's a lot of random information, but it's nice to keep track of the time we spent in the NICU. So far all of her genetic tests, urine screens, brain scans, and other blood work have come back clear, but her general diagnosis is Hypotonia or "Floppy Baby". We may never know what's caused her condition or if it's going to be a life long struggle for her to move and coordinate her muscles, but what we do know is every day she seems to get stronger and stronger.

We have high hopes for Lillian and intend to have her involved in Physical Therapy and Occupational Therapy as well as Speech Therapy to help with her condition. She continues to be fed through a tube at home, but we are praying for her to pass her Swallow Study in early November so we can start to feed her either by bottle or breast.

For anyone that's actually gotten through this post - I give you a gold star :)

Thanks to everyone that has kept us and Lillian in your thoughts and prayers. We ask for continued prayers for Lillian that she can recover from this condition and be able to meet the milestones of her peers with continued physical therapy and lots of love and patience from her biggest fans (us).

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About Me

Hi! This place is where I write down random thoughts and keep track of life's moments.
I try to be an open book and will answer any questions you may have about Prader-Willi Syndrome or being a parent to a child with special needs. I will be the first to tell you to enjoy your life, regardless of the cards you've been dealt!